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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Featured Q&A

What's A Common Misconception About Amyloidosis?

By A MyAmyloidosisTeam Member β€’ 24 answers

Which Amyloidosis Symptom Surprised You The Most?

By A MyAmyloidosisTeam Member β€’ 73 answers

What Amyloidosis Symptoms Keep You Up At Night?

By A MyAmyloidosisTeam Member β€’ 37 answers

Does Anyone With Amyloidosis Have A Liquid Intake Restriction? I Think I Need It I Gather Often Liquid In My Chest And Need Fluid Restrict

By A MyAmyloidosisTeam Member β€’ 17 answers
817 questions

Any Dayta On Nattokinase?

A MyAmyloidosisTeam Member asked a question πŸ’­
Las Cruces, NM
A MyAmyloidosisTeam Member

Stanford.....you are good man! Thanks for sharing.

November 6, 2023

What Is The Best Treatment For This Disease?

A MyAmyloidosisTeam Member asked a question πŸ’­
Chattanooga, TN
A MyAmyloidosisTeam Member

And pray that your doctor has a clue

September 10, 2023

Any Emedy For Swollen Tongue?

A MyAmyloidosisTeam Member asked a question πŸ’­
Ancram, NY

Any Remedy For Swollen Tongue?

A MyAmyloidosisTeam Member asked a question πŸ’­
Ancram, NY
A MyAmyloidosisTeam Member

Wild

September 9, 2023

HELP

A MyAmyloidosisTeam Member asked a question πŸ’­
Orange, CA

Is there anyone that provide me a phone number to this site? All I want to see herein:
A method to be available to download any helpful article to share with our medical team!!!! I get so tired of ME EDUCATING MY DOCTORS!

A MyAmyloidosisTeam Member

You could copy the text and just put it in a word document and print it

September 7, 2023

Does Anyone Have A Remedy For The Boated Feeling? My Husband Has Just Started Experiencing This And He Is Miserable With It.

A MyAmyloidosisTeam Member asked a question πŸ’­
Atlanta, GA
A MyAmyloidosisTeam Member

Keep a food journal. Maybe it’s certain foods that are making it worse. High fiber foods or dairy is sometimes the culprit

September 3, 2023

Why Do You Have To Wait Until Attrwt Goes To The Heart Before Tafamidis Can Be Prescribed If It Can Possibly Stop Misfolding

A MyAmyloidosisTeam Member asked a question πŸ’­
Detroit, MI
A MyAmyloidosisTeam Member

Thank you Jude for all that information.

I am in the process of getting my Health Insurance to approve Vyndamax. We'll see what happens this week. I'm so afraid they might give us a hard time.

September 4, 2023

What Foods Or Nutrients Are Contraindicated While Taking Vyndamax. Obviously Sugar And Salt Head The List. Al Sobel

A MyAmyloidosisTeam Member asked a question πŸ’­
Barnegat N.J
A MyAmyloidosisTeam Member

Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more

November 1, 2023

I Have Attr Wt It Has Not Reached My Heart Are There Any Meds Before It Gets There?

A MyAmyloidosisTeam Member asked a question πŸ’­
Detroit, MI
A MyAmyloidosisTeam Member

Find yourself a good cardiologist! Early diagnosis and treatment is key.

September 2, 2023

Is There A Difference Between Vandaqel And Vyndamax ?

A MyAmyloidosisTeam Member asked a question πŸ’­
Long Beach, CA
A MyAmyloidosisTeam Member

No difference I take 61mg
New drug hopefully will get fda approval
My cardiologist is working on the trial and results

September 3, 2023
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